A Taste of Our Little Man's First 30 Days

Dexter’s first month was terrifying; sad, heartbreaking and yet, filled with love. For Premmie Day, we thought we might share some memories from his first month. Dexter is incredibly lucky because Lenice kept a diary for him. She’s in the process of typing it and turning it into a… book, for lack of a better word. Here are a few snippets – raw and unedited:

Moments before Dexter was born: They tested my sensation with ice and when it was determined I was ok, the caesarean began. I could feel them pushing down on my stomach and pulling and yanking – like they were sitting on me, almost. I had to ask if they had started to cut me, and then I heard a tiny little cry – just one and I knew you were there.

Your dad couldn’t see anything and he wasn’t allowed over to you straight away. We could hear them talk about your legs – how long they were. I couldn’t hear anything else and no one told me anything…

After a few minutes, your Dad was able to see you. He said they had you wrapped in plastic and then they took you to the neonatal intensive care unit. They wheeled you past me, but all I could see was your head. That was hard because I couldn't even touch you. Your Dad went with you, while I stayed behind to be stitched up.

You weighed 1.59kg with a head circumference of 29cm. They don’t measure length anymore, but we have since estimated that you were around 35cm long. You had your injections and were given the APGAR test, which you failed miserably at first! (Lenice had to wait 8 hours before she saw Dexter! Eight hours! He had visitors who saw him before his own mother saw him! Imagine the heartbreak.)

You were ok during the night, but not great. They tried to take the respirator out again, but you were struggling to breathe, so they had to put it back in again. You weren't steroid ready, which means your lungs will need a lot more support than they should have needed. Your heart hasn't closed over yet, but this isn't much of a concern as the nurses say this can take a couple of days in full term babies. (Of course, Dexter’s heart took a little longer to close over!)

You seem to respond to my voice and even Aunty Carol’s! She’s already getting you in trouble and you reacted to her voice as soon as she spoke to you!(I told him he was naughty- that he was born too soon… he cried! This was our first moment together!)

I told your Dad he should visit you before coming to bed. He mentioned he’d visited you on his way to dinner. He’s sneaky like that!(Andrew loved him instantly… Dexter does that to you!)

Turns out you kept the nurses very busy last night... They were worried about a potential bleed in your lungs. Your saturation levels dropped badly and so you needed to be pumped with 100% oxygen for a while. (I held my breath every morning, when I read the Dexter update text message from Lenice! Hours of sleep were lost to worrying about Dexter.)

You've been given morphine and nitric acid and they keep checking you for possible infections. I really want to hold your hand, but I’m so scared of passing anything on to you, so I’m trying to keep touching to a minimum.(Imagine not being able to even touch your baby’s hand!)

I went and had quiet time with you. Just sitting with you definitely helps me.

You had a lumbar puncture today. I didn’t know it was taking place, so it made me worry, but your Dad said it was just to check how your pneumonia was coming along. (Dexter had countless procedures, antibiotics, medicines, transfusions etc. etc.!)

When I came back from expressing, your Dad had some great news for me; I was going to get to hold you! I was so happy I burst into tears! I couldn’t believe it. Eight days I have waited to hold you and it was so great! I had you for about half an hour and it was beautiful. I got to hold your head in my hand and kiss your fingers! My goodness, I thought my chest was going to burst with the amount of love I felt for you. You were so well behaved, too and didn’t squirm or set your alarms off.(Eight days before she could hold her son! Eight days! Andrew had to wait 21 days before he could cuddle his son! His aunties snuck in a cuddle, when no one was looking, when Dexter was 92 days old! Our Little Man was three months old before we snatched him up for a few amazing seconds worth of cuddle!)

You’re now having one millilitre of milk an hour. ( Seriously! One millilitre! Go and measure that – see how little it is. Lenice had to express milk for 87 days before she was finally given the opportunity to feed Dexter! I can’t believe she had the strength and perseverance to be able to express for so long!)

You've had a few de-sats today. You've been able to pick yourself up fast enough, which is good to see. You did give me a big scare, though, when I was holding you. Jan decided you didn't need CPAP, but she put you on some oxygen prongs. You were with me for around 30 minutes, but then your oxygen levels dropped to the 40s. Along with that, your breathing rate dropped and then your heart rate dropped. You were limp and your colour was changing. You didn't listen to my telling you to breathe or Jan touching you. So, you were put back into your crib, and you got your levels up straight away! I called you a little shit, and Jan just looked at me, but then said I was allowed to call you that, given what you just did to me! (Dexter did this a few times… he never made it easy for us.)

Basically, today we were taken into a room to speak with the doctors regarding your brain ultrasound. They can’t tell us why, how or to the extent, but we have been told that you have a form of brain damage. A thing called PVL that affects the white matter of your brain. (The day the world broke. The day we finally learned what was actually important in life.)

They can’t give any definite answers, but we are looking at difficulties with movement and learning and development. They can’t say how bad or to what extent. Worst case scenario is that you will be wheelchair bound. But, we aren’t going to know how severe it is until you reach the developmental age, so when you should be rolling over, crawling, walking, etc. They’ve said that on a scale of mild, moderate and severe, you are likely to be moderate.

We really are trying to be positive, but its so hard.(Dexter’s efforts and determination are inspiring. Go Cheeky man!)

Every day something happened… often terrifying. Dexter was in hospital for 144 days… longer than many premmie babies, but less than some kids. But, every day (almost… 142 days out of 144 days) Lenice sat beside Dexter and held his hand. Andrew was there as often as he could be, while studying and driving to Sydney each day. After Dexter moved to Wollongong, Lenice would call Andrew, worried about where he was. It would be midnight and Andrew had to work the following morning… Andrew would be in hospital, cuddling Dexter.

Dexter’s 144 days were difficult, but Dexter came home and not every premature baby’s story has this happy ending.

This was a blog post. To see the post and the photos, click on this link: Premmie Day. The blog entry was posted on 04/02/2013.

Read more - Dexter's CancerWatch Dexter's premature story in these three photo videos